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Saturday, December 31, 2016

It was December 31, 1996 -- 20 years ago today -- that I fell suddenly
ill with what was later diagnosed as myalgic encephalomyelitis. I've
been sick for nearly half my life now. While I used to spend this day in
sad reflection over time lost, I'm instead attempting to see it as a
day to honor all that I, along with the millions of others suffering
with this illness, have overcome. We have faced more than most people
will in a lifetime: the loss of our health, careers, social life,
independence, relationships, hobbies, ambitions, hopes, dreams and the
ability to fully participate in all our many passions or even in the
simple activities of daily living. We have withstood the doubts of
others and the stigma of an illness poorly understood and marginalized
for decades; one that has few answers and no accepted treatments to ease
our many debilitating symptoms. We have suffered with bodies that don't
function properly, and that sometimes reduce us to spending days (and for some, years) in darkened rooms where we can do little but focus on
one breath as it follows another. And yet, we endure. We have learned,
despite such pain, suffering and loss, to still find joy, love and the
will to carry on. Without question, none of us would have ever chosen
this path for ourselves. But it was the path given to us, and we each
battle it with more dignity and strength than we probably ever realized
we had within us. And that is certainly something to honor and commend.
So, I choose this day, and everyday, to stand proud in all that each of
us has overcome, and to continue to defy this illness with as much
spirit, hope and grace as possible. Wishing everyone a brighter,
healthier, hopeful 2017. May it be a year filled with promising research
that finally provides clear answers, treatments and renewed hope for
each and every one of us.